Cornelia de Lange Syndrome - FAQ

My pediatrician wants to schedule my child for a Nissen fundoplication and gastrostomy tube placement for tube feedings. I still want to try to teach my child to eat by mouth. What should I do?

Even after fundoplication and gastrostomy tube (G-tube) placement, children can be fed orally, as long as aspiration isn't a risk. In children who take enough calories orally, the G-tube can be used to relieve air buildup in the stomach. For children who take enough calories orally but have a difficult time getting enough liquids, parents may use the tube to supplement liquid intake. In children who aren't eating enough, using a G-tube can ensure adequate nutrition while the child is learning to eat. The family can decrease tube feedings as oral intake increases. Gastrostomy tubes can be removed when they are no longer needed, usually after it has not been needed for several months. The hole in the abdomen usually seals shut within a few days of G-tube removal.

My child has episodes of crying and I can't get her to stop. What can I do?

First, ask your pediatrician to evaluate your daughter to rule out obvious physical problems, such as ear infections, sinusitis, and gastroesophageal reflux. If medical conditions are ruled out, your provider might focus on other approaches, such as a behavioral program or behavioral evaluation, and possibly medication.

My daughter used to sleep well, but over the last few months has started awakening many times during the night. She doesn't seem to be in pain, but won't go back to sleep.

First, make sure there is no medical condition, such as dental caries, esophagitis from gastroesophageal reflux, or constipation, that is causing the frequent awakenings. If none are found, your Medical Home provider may refer your daughter for a sleep evaluation and/or test for ferritin and iron levels (iron deficiency may cause restless leg syndrome). Your Medical Home provider or sleep specialist will work with you around behavioral approaches and/or medications.